(Writer’s note: The contents of this blog may be difficult to read).
A body out of control. That’s what chemotherapy feels like to me on this the fourth day of my first cycle of treatment.
I entered into chemo mentally and physically ready to accept the poisonous chemotherapy drugs that will hopefully rid me of my cancer. I was happy to finally get the treatments started, having waited for four months.
As a cancer patient, you’re told that chemotherapy has cumulative side effects. I was surprised how quickly the side effects came on and how they can change in less than a day.
I thought I was prepared. I wasn’t, despite the many briefing sessions and an array of reading I had done ahead of time. Part of the preparation included having many people around me who care, help, and stay in touch by phone or email. They are blessings in my life and are my link to the outside world.
But ultimately, this cancer walk is a solitary sojourn. I travel on this treatment journey very much alone. Only those who have walked this cancer trail before me can fully understand what it feels like.
It’s also a lonely walk. For my own protection, with chemo treatments I will become immunity-compromised (the second week of treatment makes me most vulnerable), so I can get sick relatively easily. I have to stay away from crowds, public places, and pets.
I feel like a prisoner in my own home, as it is the safest and cleanest place for me to spend these next 18 weeks while under treatment. The only public places I envision spending time in these next few months will be associated with my daughter’s wedding, if I am well enough to attend.
The first and second days of chemo were fine. I got through the first 48 hours relatively nausea free. The potent nausea drugs worked (it took us three drug stores to finally get them) and I managed to handle food and its preparation. My energy levels were pretty good.
Then came Day three. It hit hard. Chemo’s side effects surfaced.
I’m not a cryer, but I burst into tears three times during the day. They came from nowhere, without provocation. Was it hormone adjustments to chemo or just one of its many complications?
My mouth started to get dry overnight. It felt like a stampede of turkeys trotted through it. This occurs even though I have to drink a minimum of two litres of water a day to flush my body of chemo to prevent it from accumulating near my vital organs where it can damage them if left sitting there too long.
My taste buds have been deadened. I have no appetite and the smell of food makes my stomach spin. It aches with hunger, but I can’t eat. I have to force food into my body because it needs nutrition to offset the chemotherapy and rebuild healthy cells that are getting killed with the treatment. I get dry heaves just brushing my teeth.
As I write this blog, I just finished steeping a pot of fresh ginger and honey tea so that it can ease the butterflies in my stomach to try and eat something this morning. It tastes awful, but I’m hoping it will work. I’m not sure if I’ll be able to finish it.
I am cold all of the time while the weather outside is in the mid 20’s and sunny. My skin is getting drier, flakier, and is starting to itch as the moisture is sucked out of it with chemo. Dark circles are starting under my eyes due to a lack of restful sleep. My scalp hurts. I’m told this is how it starts to feel once chemo churns through my body in advance of shedding hair.
I’m lightheaded. Then there is the tiredness. I drift off into catnaps just sitting in a living room chair. This is not common behavior for me as I have never been a napper.
But it could be worse.
As I was getting infused with chemo, my nurse said one of her patients is a young man with little children who works as a construction worker. He comes in for his treatment, then returns to work because he has no sick leave benefits and has to provide for his family while he’s sick. She told me I was fortunate to be off work while in treatment, and to be glad that I don’t live in the U.S. to get the medical coverage I need for cancer.
I am lucky. My employer has provided me with sick leave benefits, enabling me to stay home and recover from treatments. I am also grateful for our universal health care system that is paying for all of the costs of my cancer treatments. Estimates say the various stages of treatment could climb to many tens of thousands of dollars when they’re all done.
The chemotherapy is liquid gold for a second chance at life. It’s one that I’m not sure I could afford if I had to pay for it on my own. As a friend said a few days ago: “Chemo is your friend.” I honor that friendship dearly.
I live with cancer, one hour at a time, one day at a time. I move forward in this cancer journey taking one step at a time and do so with Strength, Courage, and Determination.
The house is quiet on this early Sunday morning as I write this last blog before my first chemotherapy appointment tomorrow. The chemotherapy infusions that begin tomorrow morning will provide me with a second chance to live.
I don’t take this second gift of life lightly.
For now, I am cancer-free. However, the reality of living with cancer has finally set in with the onset of chemo as phase two of ridding my body of cancer.
The chemotherapy, radiation, and hormonal therapy to follow are insurance markers to prevent cancer recurrence. These treatments are all temporary phases of my life that I will have to go through to get better, and hopefully stay cancer-free. Twelve to 18 months from now, if all goes well, my body should return to the way what it was before my diagnosis.
As positive as I have been, and as calm as I’ve tried to be, knowing that chemo starts tomorrow has elevated my anxiety to the highest level I have experienced on this cancer journey. The mastectomy and cellulitis infection that followed surgery were easy compared to what is to come these next few months.
Living with a cancer diagnosis reminds me once again that life is precious. Despite one’s best efforts to minimize the risk of illness in proper diet, healthy weight, and exercise, one has little control over contracting cancer. Being healthy and staying well are gifts I took for granted prior to getting sick.
In this cancer journey, I have wanted to stay calm in the time leading up to chemo, but I can’t—especially in these last few final hours. More now than ever, I have to stay busy to keep my mind off cancer thoughts. I’m restless and not sleeping well.
I want to get on with the chemo treatments, but I dread them at the same time. Chemo hasn’t begun, and already I want it to be over with.
This is the first time in the cancer journey that I feel fear of the future and what is to come. I have to relinquish control, which is a life-changing behavior for me. I don’t deal well with the unknown, even though I have done all I can to prepare for cancer treatment mentally, physically, emotionally, and spiritually.
It’s hard to articulate what I’m going through in living with cancer in all aspects of my being. My friends who are cancer survivors can relate to the experience, and help to ground me when I’m feeling alone in this journey. I’m grateful to all of them for their understanding and empathy in being present to me through this cancer experience in ways that no others can.
They have each have walked into cancer’s dark tunnel of the unknown and made it through to the other side where light once again appeared. They are well, and their survivors’ outlook anchors and inspires me daily. It is from them that I have learned to live with cancer in gaining strength, courage, and determination to fight this life-threatening disease.
In spending time this past week with a dear friend over lunch, she framed the chemo experience for me in a way I hadn’t thought of. She’s journeyed with another friend of hers whose sister is currently in treatment for breast cancer. She reminded me “chemo is your friend.” It will be my mantra on days when I don’t feel well.
These past two weeks have felt like I’ve been at work again as each day has been occupied with a multitude of commitments. I have numerous pre-chemo medical appointments, and meetings for final arrangements for our daughter’s wedding. By design, I have spent time with friends over lunches and coffees before I become housebound to minimize the risk of infection with lowered blood counts with chemotherapy.
As a family outing, we managed to fit in the one and only baseball game I could see this summer. It was a fun distraction on a beautiful warm summer’s night. The home team lost, but the fresh lemonade and popcorn helped to round out the game night fun.
It has been an emotionally trying time for me these past few weeks. I have juggled medical appointments that have made me feel sad and anxious, while finalizing wedding plans that have made me feel happy. I have bounced from one extreme to the other between the contrasting appointments. I don’t feel well-prepared for either situation. I wrestle with coping with cancer, while being frustrated in not being well enough to be fully present to celebrate a big day in our daughter’s life three weeks from today.
Then there are the current and soon-to-come physical reminders that the cancer diagnosis is very real. I had day surgery to implant a port and central vein line in my chest and jugular vein. Touching the device is a creepy sensation; it’s physically and psychologically uncomfortable housing this implant inside my body and makes it difficult to sleep.
The port and IV line is a subtle physical reminder of cancer each time I look in a mirror and see them project through my skin. The port and IV “life-saving line” is the hub through which the chemo cocktail drugs will flow throughout my body. They will also serve as the location from which lab technicians will draw blood regularly to monitor my blood cell counts for chemotherapy to continue.
Other physical prep has included a wig fitting and two wig styling appointments. My hair had to be shaved down to my scalp to properly fit the wig. I now feel like “GI Jane” of the army. Going through the experience was eased knowing that Jen, my hairstylist of 15 years, was alongside me in making sure the end result was complimentary to my skin color and facial features.
Although it’s been fun to play with wigs and taking on a new hair persona, buying a wig and the reality of knowing why I need one saddens me. I can envision what I’ll look like in two weeks when I’m bald, except for the hollowed-out eyes and pallor that will come with chemo as it cumulatively collects in my body.
The breast prosthetic appointment was life changing, but was handled with much care and sensitivity by my fitters. I came home with a “boob in a box” and special bras to wear with it. When I am well and strong enough, I will return to the store for a swim prosthetic so that I can resume my aquasize classes as part of my fitness to fight cancer. (As a 20-year aquafit participant, my goal is to one day support and encourage other breast cancer survivors in maintaining their fitness by teaching them in specialized weekly aquasize classes).
In addition to these more noticeable physical changes, I had to buy artificial eyebrows and eyelashes for wedding photos, and had to hunt down organic body products to minimize dry skin and chemical contacts with chemo, and prevent enamel erosion of my teeth.
With both the wig and breast prosthetics, I now have to learn and practice new regimes in skin care and handling of my “replacement parts” to prevent deterioration from wear. There are also new routines to develop in oral hygiene to prevent chemotherapy sores in the mouth and throat, and new practices for scalp and skin care with chemo complications.
As I juggled the needs to attend to physical body changes, I also had complete disability claims paperwork to be away from work on sick leave. There is a waiting period of 120 days for activation. My oncology social worker helped me to fill out the forms, while my medical oncologist filled out the doctor’s reports and wrote an updated medical leave of absence letter for my employer and disability insurance insurer so that my benefits can be commence in November.
Today, I will spend my hours staying productively busy. My family will help with housework in scouring the house up and down to clean it for chemo. We will put things away that we temporarily don’t need, and make space to replace them with things I need to have nearby as I go through chemo.
The puttering and cleaning will be useful and therapeutic in helping me to relax in the countdown to chemo. By the end of the day, I should be exhausted so that I can plop down to sleep without effort and wake up to greet the day with chemo starting at 10:30 tomorrow morning.
The first few days of chemo are expected to take a physical toll as my body adjusts to the treatment. In my absence, my daughter will be a guest blogger to let everyone know how I’m managing with the chemo. When I can, I will return to write more blogs to share my cancer travels as you continue to walk with me in my cancer journey.
I'm on the road to recovery and enter the second phase of my cancer treatment with Strength, Courage, and Determination.